Guest Post: Sickaversary

My friend, Jenny R, wrote these profound words about her sickaversary.

10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it:

I want to write something incredibly profound and moving for my 10 year sickaversary. But I can’t. Writing used to be my outlet. It was something that came easily for me and I was proud of my talent with words. Business school beat my affinity for flowery and often turgid prose out of me in favor of conciseness and bullet points. But even so I still retained a nugget of my craft and found ways to enjoy penning a tax research paper in place of angsty poetry.

I could say that it happened the second the virus entered my bloodstream. That a microbe found and destroyed my skill in a summary execution. And in some ways that is true. But it was a slower and (at times) more devastating death. The virus/CFS hijacked my focus and memory immediately. A year later migraines and their medications took and continue to take my words (a condition called aphasia). Then for good measure they took my ability to type or write without angering the ruthless dragon that is the permamigraine (occipital/trigeminal neuralgia). More recently nerve compression from herniated cervical discs and stenosis keep my hands from working properly. But even without these numerous, concrete medical issues, the fact is that I lost faith in my mind a long time ago. That kind of self doubt is as debilitating as my motor deficits.

Because no matter what happened in my life – whether I was single or attached, fat or thin, rich or poor, happy or sad – I had my intellect. Twenty years ago when I graduated from high school I was awarded Most Likely to Run for President and bound for one of the best business schools in the country. I knew I was smart and I felt like because of it endless possibilities awaited me. I was told all my life if I studied hard that everything would work out. Above is a picture of me at 18. Her innocence and joy are hard to look at because I know she would be heartbroken if she knew how it all worked out. That the girl who wanted to major in literature struggles to focus on a young adult audiobook now. That the former CPA who used to run audits can hardly balance her checking account anymore.

This is usually the time where I start to worry I’m alienating people with the harsh truth of living life with a debilitating illness. The part where I list the joys that are still plentiful in my life. The part where I feel pressure to say that I’m grateful for getting sick because it made me see beauty where I once did not. That now I know what really matters in life. So it’s all good.

But I won’t do that this year. It’s been 10 fucking years. I have every right to be angry that I’ve spent 10 years in bed. That I watch my friends and family travel, get married, have kids, excel in their careers, and move forward in life. I feel stuck. Trapped in amber. Preserved at the age of 27 except with more lines on my face, gray hairs, and a crappier metabolism.

Of course I know it could be worse. I am friends with people much sicker than I am. I have friends who have died. I’m a white girl in America with parents who can afford to help her. My privilege abounds. But because of the plentiful cheery disabled person tropes, people’s discomfort with their own mortality and the pain of others, our positive attitude focused culture, and the ingrained socialization women receive to be pleasant and meek, I have subjugated my own grief time and again over these last 10 years. So for today I’m sharing it with you. I’ll resume regularly scheduled Stepford programming tomorrow.

But I’d be remiss to say that my life of perpetual pain, fatigue, and loss is devoid of love and joy. It’s so not. I’ve got a kick ass boyfriend who genuinely enjoys taking care of me instead of doing it out of obligation, friends who never give up on me even when I disappear down a migraine hole for months, a niece and nephew that don’t see a sick person just their purple-haired Aunt Jenny, parents who let me and my cats move in and disrupt their swinging Empty Nest life without hesitation, a little sister who in many ways has become my big sister by taking care of me whether than means pedicures or help with errands, a Bestie/Braintwin who knows Jensen Ackles and the cuddles from Corgis can cure anything, my late babycat Cameron who was always up for spooning and never stopped trying to groom me, and a wee tortie Callie who is perfectly happy to spend her days in bed with me. These people love this Jenny. Even if she is broken.

I want to sum this up with some amazing wisdom I have gleaned from these last 10 years but all I can say is that it really sucks to watch everything you thought made you…well…you disappear into a fog of fatigue and relentless pain. It is devastating to watch what you hoped for the future, in my case a life of professional success, exciting travel with a loving husband, and maybe even a kiddo or two, disappear down the drain. The grief never really ends – it just ebbs and flows.

But it doesn’t mean I don’t have hope, gratitude, joy, love, and even excitement in my life. Doctors have found consistent, biological differences in CFS patients and the questionable studies that relegated it as a somatic disorder that only psychotherapy and exercise could cure are being disproven. I’m going to see the Old 97s play next month and am hoping for a trip to Colorado at the end of the summer to explore canniboid oil for pain relief.

So my great wisdom is that I don’t have to pigeonhole myself as the smiling disabled person who puts everyone at ease and is full of folksy wisdom. But I also don’t have to live solely in my pain, day in and day out. I can be grateful and grieving at the same time. I can look forward to tomorrow while being sad for that hopeful 18 year old girl that didn’t expect this future. To quote the 11th Doctor, “The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.” Or better yet, to quote the TARDIS, “[Human beings are] so much bigger on the inside.”

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PACE-Gate: Continue Tuller’s Work

Journalist David Tuller is well-known to the ME community. His series Trial By Error on Virology blog launched PACE-Gate into the scientific mainstream. Since that series began, Tuller has also written about the devastating effects of PACE-style “treatments,” garnered support from academic colleagues for independent investigation of PACE, and participated in reanalysis of PACE data. Tuller’s contributions to ME science were recognized in 2016 with awards from both the IACFS/ME and the Tymes Trust.

Now David Tuller needs your help.

Tuller has been able to do all this PACE-Gate work on his own initiative because he has also had an academic position at the University of California, Berkeley. But budget cuts at Berkeley will terminate Tuller’s position on June 30, 2017. Yesterday, Tuller launched a crowdfunding campaign for $60,000 to support his work.

The money will allow Tuller to spend the same amount of time on PACE that he has done to date – about half-time. He will continue to investigate PACE-related issues, and publish on Virology Blog and possibly other publications. Funding will also give him the flexibility to pursue other activities like more open letters, travel, and whatever else is needed. But he says:

I want to be clear that I will continue this effort no matter what I receive through this five-week crowdfunding campaign, which ends June 30th. The question is how much time I will be able to devote to it.

Why crowdfunding? Tuller can’t work for free (nor should he have to). He is committing to another year of this work, but obviously needs to earn a living. Crowdfunding will help him move forward knowing that the PACE work is supported. He chose a one-time campaign through Crowdrise instead of something like Patreon because he did not want to make an open ended commitment. Many crowdfunding platforms allow the exchange of contributions for rewards, but in this case the work itself is the reward (for all of us).

Contributions are tax deductible through the support of the Center for Scientific Integrity (home of Retraction Watch), which will pass the funds on to Berkeley. There are fees that take nibbles along the way (8% by Crowdrise, credit card fees by the Center, and 4 or 5% by Berkeley). Those interested in making large gifts should contact Tuller directly (

Science is supposed to be self-correcting. Why haven’t we seen the scale of investigation and retractions that we saw with XMRV? Simple: the stakes are not as high to those outside the ME community. The XMRV study published in Science in 2009 purported to show that 3% of healthy people were infected. That represented a threat to the nation’s blood supply, and the scientific enterprise responded appropriately. NIH invested $1 million to replicate the study, and retractions began even before those results were published.

But the only people being directly harmed by PACE-style “treatments” are ME patients. Furthermore, those harms are counter-intuitive to most people. After all, who could be hurt by a little more exercise? Science can only be self-correcting through replication and scientific integrity, and those require funding and attention.

It was ME advocates who recognized the deeply flawed science of the PACE trial, and worked for years to bring attention to it. We provided the foundation for Tuller to take that work to a different scientific audience and turn up the heat on the journals who have published that flawed science. Now the ME community (and hopefully our allies) needs to step up again and provide Tuller with the financial foundation he needs to extend that work further.
*Edited to clarify Tuller’s position at Berkeley

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Book Review: Through the Shadowlands

Julie Rehmeyer is a science writer and person with ME who has written extensively about research and controversies like the PACE trial. But today, she publishes Through the Shadowlands, a book about her personal journey through ME and back to life.

I have read this book from two perspectives. First, I had the opportunity to read Julie’s early drafts and provide feedback as her friend. But before publication, I was able to read the final version from start to finish with the perspective of a reviewer, and I offer my comments here.

The first thing to know about this book is that Julie can write. She tells her story with honesty and clarity, and the narrative tugs the reader along her winding path from childhood through illness and on to the other side. Julie can explain facts and details so clearly, and then write passages like, “The straw of my house gleamed golden against the brown patches of mud plaster, as if the house were the love child of the sun and the earth.” The experience of reading this book is a pleasure.

Julie’s story of getting sick, and how her life began to shrink, will feel very familiar to people with ME. She describes knowing, “Something is really, really wrong with me.” We’ve all had that moment – before diagnosis, perhaps even before seeking medical care. Each of us has that point of recognition that our bodies have shifted out of health in a serious and fundamental way. And Julie entered the same labyrinth that so many of us did: the trips to different doctors, the suggestion or diagnosis of a psychological problem, the lack of scientifically established treatments. She faced victim blaming, where someone insists that if the suggested treatment didn’t work then she must not be trying hard enough, or must not want to get well. We’ve all been there.

But Julie isn’t just talking to ME patients with this book. In fact, I think she is talking primarily to people not familiar with ME. That audience will feel, along with Julie, what this is like. She writes, “I tried to explain that running off after every quack treatment my friends pushed on me just made me feel desperate and hopeless. The reality was that nobody knew what to do about this fucking disease — if they did, I would have heard about it by then.” I wish I could have been so clear with the dozens upon dozens of people who have tried to push answers on me over the years.

Despite choosing to accept her reality, Julie does not stop looking for answers and rejecting ideas that do not make sense to her. Supplements are a way to part the “gullible” from their money. She found people who wore magnets in their underwear or relied on homeopathy or wore devices that zapped electricity through the wrist. But other ideas do not sound so strange to her, like a shamanic journey or mold avoidance or consulting a psychic.

And this will be one of the challenging parts of Julie’s story for people to accept. Realizing that science was not going to provide her with answers, she decided to try a “Hail Mary pass” and test whether mold was making her sick. She chose mold based on her intuition. For some reason she cannot articulate, trying mold avoidance felt right when magnets and supplements sounded wrong.

After spending two weeks in the desert, Julie finds that she does react immediately and strongly to mold (or something else in the environment). And showers bring near instant relief from the worst of the symptoms. Over and over, she experiences sudden, crippling attacks and is restored by showers or other decontamination methods. Julie deftly explains the science behind mold reactivity (while noting that so much more science is needed), and theories for why her reaction could be so severe and resolve so dramatically. There is no proof beyond her self-experimentation, but there can be no denying that this is true for her.

Julie’s mold avoidance actually increases her sensitivity, and the severity of her reactions. There are a number of frightening episodes, but she clings to the fullness of life as she navigates through them. Despite her illness, Julie resumes her career, meets a new man, and travels internationally. I think she shows extraordinary courage, living her life and trusting that she will be able to handle whatever the illness throws at her.

One of the remarkable things about Julie’s story is the way she balances seemingly inconsistent points of view. She tackles mold avoidance scientifically, but also holds herself open to emotional and spiritual approaches. She is constantly questioning herself and her interpretations of her experiences. Julie is willing to try things, even if they sound a little wacky, and then thoughtfully integrate what she learns. This is an extraordinarily difficult thing to do, and even more difficult to explain well. Julie does both. Through experimentation, Julie is able to reduce her reactivity to mold and regain much functionality. She is not cured, but she is much improved.

Mold avoidance is controversial, both inside and outside the ME community. And Julie is clear that, “My experience obviously does not establish that ME/CFS as a whole is caused by mold or related contaminants, and I strongly doubt that’s true. Accurately assessing how many ME/CFS patients are affected by mold is impossible at this point.” Julie is simultaneously adamant that there is a scientific basis to mold sensitivity, and that much more science and funding is needed to find answers for all ME patients.

Through the Shadowlands speaks an important truth to the world. Julie tells the truth about what it is like to live with ME in ways that patients will identify with and that outsiders will understand. She makes the case for why current medical care and PACE-like models are atrociously bad. And Julie’s determination to seize life to her fullest ability is an example of courage to everyone.

My favorite parts of Through the Shadowlands are the passages where Julie describes her connection to the earth. I have always felt a deep well of connection to nature, and I recognize the same in Julie’s description of her time in Death Valley:

I felt myself expand into this great space, this emptiness. Despite the wind’s immense swirl of energy, the land felt, quiet, still, impassive. Everything fell away from me — my body, my pain and exhaustion, my fear, my strange experiment — and was replaced with a huge and ancient stillness. All the time, I thought, this place was here, whether I was pinned to my bed or bounding up a mountain trail. As I poured out into the valley, I felt the valley pouring into me, its enormous spaciousness filling my chest.

Through the Shadowlands is an honest and moving account of what it is like to have ME, and to live a real life with it. In my opinion, both the ME community and those who have never heard of us can learn something from Julie’s story.

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Book Review: Growing Gills

I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but it is having a profound impact on how I live with ME.

I first encountered Jessica last year, through serendipity and a series of Twitter links. I took her Creative Focus Workshop because I wanted to figure out how I could write the book that I’ve been lugging around in my brain for a few years. The Workshop helped me focus, I set a daily word count goal, and I was off and running typing.

Until I did what I always do: I pushed too hard, and I got involved in new advocacy work, and my daily word count dropped to zero. I lost all my momentum, and proceeded to berate myself about it for months.

But here’s the thing: the book in my brain won’t go away. I have been in a vicious cycle of setting goals, failing to meet them, feeling like a jerk, ad infinitum. So when Jessica offered a reboot of her Workshop in preparation for her book release, I jumped on it.

And this time through, I actually understood what Jessica has been saying all along:

The secret to getting past your resistance is not about getting tough and forcing yourself through. The secret lies in divining root causes, taking them apart, and building support systems to buttress you against the specific issues you face.

I’m really good at the “getting tough and forcing yourself through,” which means I am also really good at exacerbating my symptoms and making myself sicker. Growing Gills finally finally finally got through my thick head that this is not the way to productivity.

Jessica’s view is that it doesn’t matter what circumstances are limiting your creative work. It’s not about finding more time, because everybody has limited time. It’s not about fear or stress or money, because everybody has issues with these things. The Growing Gills method helps you build a structure that will work for you. This book walks you through thinking about all your creative ideas, choosing one to focus on, and then setting up a schedule and system that will help you make significant progress in whatever time you have.

Growing Gills did raise my hackles in one way, and it was the key to finally understanding it. Jessica sees all personal circumstances as presenting the same kind of challenge, whether it’s a job, kids, or a disability. And this, to be honest, pissed me off. “ME is different,” I cried. “I’m disabled and I can’t get around that! It’s this big unmovable obstacle! How can I possibly write my book?”  It took me awhile to figure out why I had such a strong reaction.

Let’s say someone can only work on her creative project for an hour because of the demands of her job or because of time with her kids. After the creative hour, she does her job or takes care of the kids, and hopefully finds fulfillment in those activities. After my creative hour, I’m done. I don’t get to do some other productive/fulfilling thing. I’m stuck recovering from and thinking about that creative hour. And I’m also stuck with the consequences of choosing that creative hour over basic things like paying bills or cooking a meal. If I have to choose between writing for an hour or cooking a simple dinner, how the hell am I supposed to make that choice and be satisfied with it?

My challenge is not actually time because I have tons of time – way more open time than most people. It’s the energy and capacity that I have in such limited supply. A good analogy might be the parent of a newborn – does that parent snatch a nap between feedings, or spend that time creating art and suffering the extra sleep deprivation? The difference is I don’t have a sweet baby; I have a slavering monster determined to destroy my body.

All this sounds like I am justifying my defensive reaction to the idea that we all face the same trade offs and choices in our creative time. But this time through Jessica’s workshop and reading Growing Gills, I saw it differently.

Yes, I have a huge unwelcome restriction on my time and energy, and I did not choose that restriction. And yet. . . . I do make choices in what to do. I made a choice to get involved in advocacy, and write this blog, and take cello lessons. I make choices about “productivity” and “busy work” and how I spend my energy. Even in the way I deal with recovery time, I can choose to bang my head against the Wall of Nope, or I can choose to sit quietly for a bit and wait for it to fade.

Growing Gills is teaching me that the problem is not that I only have an hour for creative work. It is teaching me that I have to make choices in order to make the hour possible, and sometimes the choice will be to sacrifice that hour for a healthy dinner or a phone call with a friend. It is also teaching me to treat recovery time with the same respect as creative time: it needs to be planned for and then enjoyed without guilt.

Like I said, I truly excel at “getting tough and forcing yourself through.” It is partly how I have achieved what I have so far. But I am trying a new way, now. I’m trying to make choices based on a realistic assessment of my capacity. I’m trying to recognize when a barrier is actually the result of a choice. And I’m trying to be compassionate towards myself around my choices and the circumstances that are beyond my control. As Jessica writes, “Giving yourself crap over not working is how you dispel your creative energy. It’s literally counterproductive.”

If you have creative work but have been unable to make it happen, I highly recommend Growing Gills. It is practical and down to earth, and it is realistic. Whether you are blocked by illness, disability, job, money, fear, or family, this book will help you take an honest look at where you are, where you want to be, and chart a path between the two.

And if you need inspiration? If you need to know it is possible to have ME and still express your creativity? Look no further than BedFest 2017, a virtual concert by people with ME.

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#MillionsMissing 2017

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Preconditions, Burdens and Ableism

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or limit it.

Identity is on my mind in the wake of the House of Representatives’ passage of the American Health Care Act. (Here’s a summary of why this bill is so bad for people with disabilities.) Under current US law, insurers cannot refuse coverage if you have a pre-existing condition, and they can’t jack up your premiums for it either.

But under the bill passed last week, more than 130 million non-elderly Americans with pre-existing conditions will lose the protections they have today. Within hours of the vote, Twitter and Facebook were flooded by posts with the hashtag: #IAmAPreexistingCondition. Even celebrities chimed in.

The hashtag is powerful, because it attempts to put faces to all the health problems that we have. Denying health care for pre-existing conditions is denying health care to people. But I will not say: “I am the pre-existing conditions of ME, POTS, and thyroid disease.” I have those conditions, but my health problems are not my identity.

We have to be careful and precise in choosing language. Why? Because changing one word can change the meaning of a sentence, or a protest. I am have a pre-existing condition means I am a person with a complex identity. I am whole and complete, and my disease has not reduced me to just my need for health care. We are not a list of medical words.

We’re all prone to make mistakes with language at times, including ME allies. In describing people with ME, Llewellyn King recently wrote:

They are living a life that is a nearly intolerable to themselves and a massive burden to their loved ones, spouses, parents and caregivers. . . [ME] is vicious and debilitating, leaving the patient confined to a marginal life, a parallel and unequal existence.

I reject this description. I understand that King was trying to convey the devastating suffering of people with ME to a non-ME audience. But that quote makes me nauseous. My life is not a massive burden to my family, and my life is not marginal.

I have ME, and I am disabled. These facts do not make me less of a person. I can’t do all the things a healthy person can, but that does not make me a burden. I can’t participate in life the way I used to, but that doesn’t make my life less worth living.

Describing people as burdens, as marginal, as a list of conditions – this is ableism. Intentional or not, this language communicates that our illnesses make us less than. It reduces our identities to the diseases we have, rather than the people we are. And it tells us that a life with a disease or injury is not as valuable and worthy as a life unaffected by disease or injury. It’s reminiscent of the controversy over the film Me Before You, which romanticized the main character’s choice to kill himself because he is quadriplegic, despite his admission that he could still have a good life.

The intersection of disease and identity shifted with The Denver Principles. These principles, created by a group of AIDS activists in 1983, changed health care and how people with diseases perceive themselves. The Principles begin with a declaration:

We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People with AIDS.”

That declaration is true for everyone with a disease. We are people with a disease or a pre-existing condition or a disability. Terri Wilder taught me this when she said:

I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.

So let’s stop saying “I Am A Pre-existing Condition.” Let’s reject descriptions of ourselves that reinforce the stereotype that we are burdens, that we are marginal, that we don’t matter, that we are not people.

Because I am a person. I am a person with ME, and I deserve the same respect and consideration as everyone else. ME is a part of me, but it is not my identity. Me comes before ME.

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The Halfway Point

We are halfway through fiscal year 2017. How much money has NIH spent on ME/CFS research so far this year, and where will we end up? The short version is: based on current spending, we are unlikely to hit the $15 million that people were hoping for. Hang on, because it’s a bit twisty turny.

To date, NIH has spent $2,861,839 on ME/CFS research in 2017.

That sounds terrible. But let’s dig into that number. So far, NIH has disbursed funding for the following eight grants:

However, there are six additional active grants that have not received money yet this year. I looked at the project start and end date, and when funding was issued in FY 2016. Based on that, I think these six grants are still due for money this year:

If those grants get the same amount of money this year as they did in FY 2016, then we can expect a further $2,202,000, bringing the 2017 total to $5,063,839.

image credit:

This is a problem. Why? Because this would be a 33% decrease from NIH funding in 2016 ($7,637, 591). In fact, it would be the lowest funding number since 2012.

There’s another problem buried in these data. Last year, NIH funded five new projects. This year, only one new project has been funded. New grants would help salvage the funding total from the basement, but will there be new grants?

There are the RFAs to look forward to. The Collaborative Research Center and Data Management Center RFAs should total $6,750,000 this year. Competition is going to be fierce, and it is inevitable that some applying groups will be disappointed.

But there is a hidden opportunity cost here. I am co-PI for one of the applying groups, and I have watched the effort it takes to put an application together, up close. It is an extraordinary amount of work. I think it is unlikely that any group applying for an RFA grant has also submitted other grant proposals this year. What about after the RFA applications are submitted? I think most researchers will wait for their application reviews (projected to be done in August) before writing new applications, because the reviewer feedback can shape new applications.

In other words, while the RFAs offer dedicated funding, there may be a drop in new investigator-initiated grants outside the RFA mechanism. The groups that do not get funded under the RFA will not have new funding in 2017 because they were not able to submit those non-RFA applications.

If this plays out as I have projected, here are the total numbers:

FY 2016 FY 2017 % Change
Regular Grants $7,637,591 $5,063,839 -34%
RFA Awards $0 $6,750,000 promised 100%
Total $7,637,591 $11,813,839 55%

We come out ahead. And the RFAs represent a long term strategy. It’s not just about that influx of $6.75 million this year. It’s about increasing collaboration and data sharing, and spinning off new grants. Hopefully, the $6.75 million to the Research and Data Centers will bring a greater return on investment than if that $6.75 million went into regular investigator-initiated grants.

There is one more speed bump looming on the road ahead: the federal budget. First, there is a (decreasing) chance that the government will shut down this Friday if Congress cannot pass a spending bill. That would bring everything to a screeching halt, including putting together the grant review panels for the RFA applications.

But beyond the shut down, NIH is facing the possibility of deep spending cuts. Nobody knows what is going to happen, and NIH is hedging its bets now. The RFAs include this qualifying language: “Future year amounts will depend on annual appropriations.” In RFAs issued over the last couple weeks, NIH has started saying:

Although the financial plans of NIMH and NINDS provide support for this program, awards pursuant to this funding opportunity are contingent upon the availability of funds. Funding beyond the first year will be contingent upon satisfactory progress during the preceding years and availability of funds.

It’s not over yet.

Note: I edited the first paragraph a couple hours after publishing in order to clarify where we can expect to end up by the end of the year.

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Missing, Not Marching

I should be marching right now.

I mean, I had my plans all worked out. #MillionsMissing tshirt? Check. Wheelchair wheels freshly pumped up? Check. Water and food? Check. Ride to March? Check. Kick ass awesome sign made by my husband? Check.








But here is what the weather is doing right now:








It’s 50-some degrees and raining.

For those of you who have not had the pleasure of sitting in a wheelchair in the rain, you can role play it. Go sit in your yard, preferably in the shade with spring-like temperatures. Have someone sprinkle you with water from the garden hose. For an hour. You are wetter than usual, because more of your body is exposed to rain while you are sitting. You are chillier too, because you are not walking around and keeping warm. Now imagine that water spitting off your wheelchair wheels is soaking your legs. Rain is running down your back. The people around you are shedding rain in your lap. Oh, and your wheelchair might slide a bit on rainy streets.

So I decided not to go. This seemed like the adult decision, paying proper attention to self care and all that. Then I watched the photos start rolling in on Twitter. I started crying when I saw this one:

I began to lay the heaviest guilt trip on myself. It went something like this: “You told people you were going to march. You arranged everything. You offered to put the names of other people with ME on your sign. You asked for input on what your sign should say. Now you’re dropping out. A little rain, and you wimp out. You could have done it. It’s just rain. So what if you get cold and wet. It won’t kill you. You should go. You are a disappointment. You are a coward. You’re a jerk.”

There was a small corner of my brain that was emotionally detached enough to start marveling at this monologue. Was I really talking to myself that way? Yes. Would I speak to anyone else that way? Of course not. Do I believe all those things about myself? Well . . . yeah, I am a disappointment. Really? Well . . . .

I sat with these thoughts for awhile. Did I really think I was a disappointment to anyone for choosing not to roll and sit in the rain? Was it my fault? Ah, there it is. Fault. It is not my fault it rained. And it is not my fault that I could only go to the march in a wheelchair. It really isn’t. But I tell myself that I am the disappointment, because if this is my fault then I have control over it. And I like control.

But control is an illusion. I am sick. I am disabled. I need a wheelchair if an event involves more than a couple blocks of walking or more than a few minutes of standing. Attending the March for Science on a dry sunny day would be a hardship. I would be sicker afterwards, under the best of circumstances. If I were sitting out in the chilly rain, my pain would spike to a level uncontrollable by my medication. And this would set off a physiological cascade that would exacerbate all of my symptoms.

That’s science talk for “I would feel like shit.”

I support science 100%. My family is filled with scientists. My health is very much dependent on science. A lack of science  – especially research on ME – has confined me to that wheelchair. And the wheelchair combined with bad weather prevented me from being able to publicly show my support for science and scientists.

But my beloved city turned out, along with cities all over the world. From where I sit, science matters. It matters very much, indeed.

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Help My Sign!

I am suuuppppperrrrr excited for the March for Science this Saturday, April 22nd. I am doing everything humanly possible to attend. I’ve got extra rest scheduled this week, and a backup ride the day of the March (in case ride #1 falls through). I’ve got my wheelchair, and hydration, and I’m willing to skip the marching bits in order to attend the rally.

But I need a protest sign!

Recent protests have been a showcase for clever, funny, and poignant signs. I want to show the world what science means to people with ME.

That’s where you come in, fellow warriors! Can you help me come up with an awesome sign? Here’s what I have come up with so far:

  • Science > Alternative Facts
  • Only NIH $ Will Get Me Out Of This Wheelchair (see comment from Jenni)
  • Cut NIH $ And You Sentence Me To Life In Chair
  • Science Is Our Salvation
  • Before NIH Life Expectancy Was Age 50
  • I Have ME And I Need Science To Live

If you have any ideas for a sign, pop them in the comments. If you have a favorite from my list, pop that in the comments too. And if you want me to march (well, roll actually) on your behalf, tell me in the comments and I’ll put your name on the back of my sign.

Edited To Add Suggestions:

  • Science Rules
  • Show Me The Science
  • Science Saves Lives
  • Only Science Can Help ME/CFS
  • Science Would Help Me Work Again
  • Without Science, You Would Be Dead By Now
  • NIH Funds = Hope
  • Science Is My Hope For A Cure
  • Help Me Walk Again By Supporting Science
  • People With ME At UNREST Until There Is A Cure
  • Millions Of $ Missing At NIH = Millions Missing From Life
  • Time Flies When You’re Waiting For A Science Miracle
  • Science M.E. Up!
  • UNREST Until Science Cures ME!
  • Make America Smart Again
  • Cut NIH = Make America Sick Again
  • What Will Happen To ME With Funding Cuts?
  • Science Trumps Alternative Facts
  • Science = Hope
  • From Where I Sit: SCIENCE MATTERS!
  • Science = Medicine = NIH Funding
  • Science is True Independent of Your Belief
  • NIH Funding = Science = M.E. Cure
  • I’m marching but I’m not living
  • Give Me Life, Cure M.E.
  • Without Science, We Would Still Be Using Leeches
  • Science Enables or NIH Science Enables
  • M.E. Disables, Science Enables
  • Cure ME/CFS, Science Makes Sense
  • Without Science, My Present Could Be Your Future
Posted in Advocacy, Occupying | Tagged , , , , , , , | 62 Comments

Best Practices

How can people with ME be more engaged in research? I mean really, meaningfully engaged from the design phase all the way through to the dissemination phase?

I have an answer! With the help of #MEAction, I led a group of volunteers to develop best practices for researchers to use as they partner with people with ME. Earlier this week, we published our report and sent it to as many researchers as we could.

This was a terrific project that allowed me to combine lessons I’ve learned in a variety of contexts. I have had the opportunity to serve as a member of FDA’s Patient Representative Program, and I recently qualified as an Ambassador for the Patient-Centered Outcomes Research Institute. I am also a volunteer member of the CFS Advisory Committee’s Working Group on Patient Engagement. It’s been a steep learning curve, but this project gave me a chance to apply what I’ve learned in a way that will specifically help ME researchers.

Every volunteer brought important perspectives to the table, and they dove in to the patient engagement literature. To be honest, I probably tossed them in the deep end. We reviewed some of the articles I’ve acquired, and then discussed how to apply these patient engagement methods in the context of ME research, particularly the new Collaborative Research Centers.

There was a lot to talk about. How should researchers engage people with ME in their projects in a meaningful and substantive way? When should we be brought in (hint: as early as possible) so that our input is not treated as a cherry on top of the dessert? What accommodations will people with ME (and caregivers) need in order to fully participate? How should researchers budget for patient engagement, and how much should people be paid? How can people with ME add value to each stage of the research?

We wanted to get some guidance out to researchers as soon as possible, since the NIH grant applications are due on May 2nd. I was hoping we could write three pages or so. These volunteers hit a home run, and we put out nine pages including references.

Our report: Engaging People With ME as Partners in the Collaborative Research Centers offers the best practices we gleaned from the literature, and applies them to the context of ME research. We hope that researchers will adapt these best practices to their study designs in the ways that make the most sense.

And we intend this to be an evolving document. There is certainly more we could include, and more literature we could review. As people with ME are brought in to the research centers as partners, we will all learn more. I hope that we can update this document in a collaborative way. As we say in the report:

While the RFAs may be the current impetus for engaging with stakeholders, we hope that this will catalyze something more. People with ME can offer so much more than feedback. We can make your research more applicable, more efficient, and more successful. Let’s establish partnerships, because we will make more progress together.

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 11 Comments